As she neared the end of her pregnancy, Oluronke eagerly awaited the birth of her third child. Everything seemed normal and routine, except for an elevated amount of amniotic fluid. Doctors were not concerned and told her there was no reason for her to worry. But when her son Prince was born, there was no cry, little movement, and he had visibly poor muscle tone. A tense team gathered immediately in the delivery room to resuscitate him. Finally, after receiving oxygen, he gave out a barely audible cry. As Oluronke looked back at this moment, she said, “This is how our journey with X-linked Myotubular Myopathy began.”
Despite his dramatic entrance into the world, doctors assured Oluronke that Prince was fine. But without a specific answer to explain his weakness, he was transferred from the smaller hospital near their home to the larger Duke University Hospital within 24 hours of his birth. For Oluronke, she took this need to transfer Prince as a sign that his condition was actually quite serious. She was right.
Weeks went by in the hospital, and the medical staff continued to be at a loss for answers. They focused on keeping Prince medically stable and safe, avoiding specific treatments since they did not know the root cause of his symptoms. Prince continued to receive oxygen regularly, struggled to feed and lost precious weight. And after two months, genetic testing finally confirmed a diagnosis.
Prince had X-linked myotubular myopathy (XLMTM), a rare genetic neuromuscular disorder characterized by muscle weakness that can range from mild to very profound and debilitating. XLMTM causes weakness in muscles that are involved in swallowing and breathing, and patients often have severe respiratory distress and require ventilation. A rare disorder affecting about 1 in 50,000 male births in the U.S., XLMTM can bring potentially life-threatening complications during infancy and early childhood.
Doctors prepared Oluronke and her husband for the worst. They told the family that Prince would require support for the rest of his life – if he even made it out of the hospital. “I was in such shock that I could not absorb what the doctors were saying,” explained Oluronke. “I did not know where to start, how to help my son. I had never been exposed to a child so medically compromised. It was a nightmare and I wanted just to wake up.”
While still in the hospital, Oluronke researched XLMTM on her own, reached out through social channels to other families, and worked with the hospital staff on how to best care for her medically fragile son. Prince received a tracheostomy, which Oluronke believes gave him new strength. He began to hold hands, to grab for things. With faith and family, she became determined to move past her fear and embrace the challenges ahead. After four months of hospitalization, Prince went home.
Prince reunited with his two older siblings for just the second time in their lives. They had questions but embraced their little brother with joy and unconditional love. Oluronke drew strength from their example. “If they can, I can.”